Sussex

Horsham to be exact. What a lovely little town it is and very old and quaint in the centre. I arrived early as did a friend of mine so we set off on foot to explore. we must have looked a bit strange in the sunshine, dressed like Undertakers in our Morning Suits! We stopped off and had a beer in the centre - a nice pub and if we had stayed a little longer they had some sausages in french bread they were passing out at the bar. The Rugby was in full tilt on the TV and it was just a lovely day.

We then went to the meeting and had a great time. they do things very differently in Sussex and it was just so pleasant to sit down and enjoy the afternoon and the meal in the evening. i had to sing for my supper a bit though as I did the response to the visitor's toast but that was fine and enjoyable as it had been a good meeting and so it actually sounded like I had enjoyed it.

It would have been nice to be there without the car and to have spent a little time seeing the sites and spending some time in the local pubs. I am quite pleased with that and I was home before 10:15 so pretty good timing too.

The house is in darkeness and all quiet so I'd better not disturb anyone.

Quiet as a House

L has gone off for three days to train for her Argentina expedition. I am off out this afternoon and wont get back until this evening. Not sure if A is even in the house. Lovely sunny day and We ware all moving around each other and not saying a lot! Mrs. F. is doing something somewhere in the house, I am at this computer once again.

It is amazing how reliant we are on it these days. I am off to Sussex and so I am checking a satellite photo of the place and seeing where I can park, working out the time it will take me and checking out a joke or two as I have to reply to the Toast to the visitors this evening.

Well it wasn't so bad

Funny thing was Mrs. F's name was gotten wrong to start with and so I made the most of calling her Karen all night and so I got plenty of laughs in. Karen -it turns out - was a strip-o-gram lady acquaintance of a friend of a friend. :-)

We did enjoy ourselves and that is the main thing. not sure if Mrs. F did but the office humour sort of spilled out into the evening and you either rode with that or missed out.

I don't think we have been for an evening out to friend's for 2 or 3 years at least.... I enjoyed it, I hope we get back into the habit of getting friends around again.

Why tell me now you don't feel well?

With less than an hour to go before we are off out to some friends - now I am told Mrs F. doesn't feel well. She knew this morning and somehow expected what? A miracle - for goodness sake, now I have to live with mayrterdom all night - I could have easily made excuses this morning or early afternoon to cancel but no - first time she meets this lot and she is coughing and spluttering all over the place.

Thank goodness I am out on my own tomorrow down in Sussex.

Stages of happiness

I am gradually building myself up to being Mr. Happy again. There is still a way to go yet and as I was reminded in Steve's blog the other day, you never actually get a fully clean bill of health you are always under the threat of recurrence. So be it and move on is the mantra. Getting on with it just isn't that easy at all though.

It is a bit like the bogey man or sandman or whatever you may call him. It may have been a regular visitor or frightened you enough as a kid and eventually that goes away. Occasionally, very occasionally, there'll be some sort of fear that will remind you of that time. The main thing is that the visits get longer and longer in between and eventually disappear altogether. Well imagine Cancer being there every time. What will probably happen is that the fear and worry will slowly over time go away - you just can't rush it and perhaps only those of us with cancer can actually understand the dread fear of it coming back.

I go to the toilet - I look for signs of blood. I almost hesitate - just in case
I get an ache or feel the area around my bladder or lower stomach give a slight pain - that's cancer back I think?
I look at anything I have and wonder - is that cancer?
The area on the back of my hand aches where they normally stick the cannula - it reminds me of the number of operations I've had in the past 32 months and reminds me of the next ones to come
My Doc wants blood tests (again) and I am reminded that I am not as fit as I was before all of this.

I'm rebuilding my life again and it takes time and patience and I'm rescuing relationships and not always succeeding. Lord alone knows what has happened to my brain as I forgot that someone asked me for a lift last night (I can't remember them asking) and I still suffer tiredness and listlessness.

It doesn't sound at all positive does it? And yet it is in every way positive but when people ask why you aren't really celebrating and enjoying things as you would expect to, the niggles and worries really are there. I'm sure they are in every person who ever survived a brush with the Big C. My friends who both had Prostate Cancer and had that removed both young guys - they get clears all the time but even they are worried after all this time. The longer you remain clear the better it is. The fear is that you've had it once and it didn't get you so it is plotting to come and get you when you aren't expecting it. The bogey man is coming after me 40 years after I banished him from my bedroom and my dreams.

I am pleased to say that the Black Dog hasn't been seen for a long time which is great. I'm sure that he and his depression laden, twist your mind stuff is off bothering some other poor soul suffering from their Cancer and keeping them awake at night and taunting them with the dark glimpses of death and malevolent thoughts to disturb their nights and cause them waking dreams of depression and hurt. I'm glad he is gone, he was worse than any of my current worries and thoughts.

Moved desks

It was an interesting move and I now sit outside the boss's office. I think it will take some getting used to as my usual foil remains back at the old desk.

Time will tell though - I ended up with next to nothing to do tonight as I am awaiting a series of photos and comments on things.

Again I am tired and feel sleepy on the train home. I think it is getting a bit better but the heat of the train and the rocking motion certainly help to send me off :-)

I am considering my options and have pulled together a draft memo to outline my concerns at going permanent too soon with the staging and treatment so far of my Bladder Cancer. One recurrence and I could be back at stage one again or on to the next steps. All of which will cost the charity too much in terms of lost production and I for one wouldn't want that to happen to them no matter how much of a safe haven it would be for me. No I'd rather that they think it through and we look to mitigate and I suppose minimise the risks by letting another biopsy set be taken and getting the outcome of that.

I'm feeling happy with myself, tired of course, comfortable with work and less stressed than I have been of late. I have a lot of stuff to do and that is really my next challenge - to get that done in the next few weeks.

Nice to know

Everyone is still asking after me. Bad news is that a friend's father has less than two weeks to live. Brain Tumour and not operable. He is beyond the point of caring and now everyone else has to endure the time that he is hanging on. Don't take that the wrong way. I would hate that my family or friends should suffer. I want my family to remember me as I am now - not some drugged up, incoherent person in a Hospital room. NOW I feel for the family more than anything. Now it becomes personal and spiteful and cruel. Life IS like that I suppose. You'd rather remember people in a certain way and it isn't always possible.


I'd rather go by saying goodnight to my friends and just not being there next day. Remember me for what I was - I'd hate to become a burden or to leave a sad memory for anyone. Sometimes it is better that it just happens, everyone is shocked and then they get over it and move on.


I was not allowed to see my Grandfather in his last days - I was probably just turning 17 I think and I did go and see him when I was in London and not working. I was steered away from his last days. I loved him dearly and I could see the pain in his eyes when I went to see him and he couldn't talk or I didn't understand what he was trying to say to me.


I don't blame my parents for that at all - I remember him as a lovely, funny and mischievous Grandfather and that is fine. I can only NOW begin to understand the pain of that decision on him to no longer see his grandchildren but - what a courageous thing to do, it is some sacrifice, as you don't want other people to see you in that sort of pain. Having seen it since, it doesn't help seeing someone you like, love or admire at death's door and moving up a seat each moment in God's waiting room.


So I feel for my friend. His father is an inspiration to him and this is just terrible as at the same time we were talking about my good news and it just brought it home to me. He was really pleased about my news and I was saddened by his. Life has some cruel twists sometimes.

Looking forward to a night out

Twice a year we get a big meeting of all the Provincial Officers in our Provincial Lodge. This afternoon and evening it will be a chance for a good 300 or so of us to meet up and have a few drinks and a meal together and catch up with old friends and all the latest news and views.

It is a busy old meeting and so I am taking the bus there and will call afterwards to get a lift home. I drove there once and it was pretty grim to get parked and to get away afterwards. This way I can continue to have a beer afterwards and then phone to arrange a lift.

I am looking forward to this one as it is the dinner one - they do a lunch time one in October and I don't often go to that so this is a useful time to meet up with some other people and catch up on the gossip and see what everyone is up to.

At least I'll be out of the house and with some good friends.

Happy with my own company?

Some say that an INTJ are happy enough with their own company and that is true. I can happily go and sit in a pub, with a book or newspaper and read that, have a beer and be very happy with my lot. I work well in a team or as a team leader and all the usual stuff but occasionally I tend to find that if I haven't been able to communicate or express myself to someone else then I tend to off load when I do meet someone who is willing to listen. I try to be equal and listen to them but I've noticed that I do tend to miss not having someone to talk to about my ongoing recovery and how I am coping. My mates are good and so they tend to be the ones who "get it".

I can't say that any discussion happens here in the house. Whether that was protection for the children or just we only spoke about the treatment and the practicals I don't know. Certainly, unless anyone actually reads this blog, there isn't a lot of discussion going on.

People at work know that something has happened, a few are in the know, many recognise that there is something wrong with me, they guess it is serious, but we don't talk about it.

The Journey so far has been an interesting one in as much as some things that have happened have been revelations, some things have been unexpected, some have been disappointing but above all, the strangest thing has been that I've changed and no one but no one has reacted to that at all. I'm not the person I was going into this. I'm not at all like I was before, I feel that I am a lot friendlier and more approachable, less likely to deal with fools any better for sure but still, significant changes to the way I used to be and everyone has gotten on and accepted all of that. Its those nearest to me that I don't connect with anymore though and that is disappointing but perhaps they notice it even more than before? Perhaps I am just too different now, too demanding, too lively, talk in a different way and am not the person they knew any longer?

It reminds me of the couple who married and the wife set about changing her Husband, making sure he dressed properly, got on at work, joined the Golf Club and Rotary etc. After 5 years she complained that"he wasn't the man she married!"

I'm sure as hell not the person I was 32 months ago.

Working at home

I sort of miss the freedom when I have to go and do "structured" work. Commuting, routine and same desk thinking is one of the things I got away from back in the early 1990s and I enjoyed the creative freedom that working at home gives you.

You can work when you like and that means you work when you are most likely to perform well. You don't have 3 hours worth of travelling each day to add to the day. You don't sit in cattle trucks for the journey and a list of other things that make the typical day to day work experience less than just "getting out of the house".

At least today it was good to get up an hour and a half later and still be sat at my PC before I'd really get started at work. Unfortunately the Third Sector is way behind in terms of flexible working and they don't get working from home at all. When I was in the IT business it was a necessary step to keep costs down and to some extent, as we tended to work at or on customer sites, it meant they could retain smaller offices that we hot desked in and out of. I could structure my day around my customer and myself and get a full day's work completed by 2 or 3 in the afternoon if I got into the office first thing, got what I needed done, went to the customer site etc. It meant that things got done, everyone was happy and I didn't get caught up in the commute in and out of London every day.

So it is quite nice being sat here at the PC and gradually working my way through the things I need to get done at my own pace.

I suppose a day off and I now value my time more than I did when I just sat here working away. Seeing the sun out I'm tempted to think that I'd like a local job that allows me to be in or out as I want. Dream on I suppose :-)

That day off

Is tomorrow and I have to get a crack on with loads of things that have piled up that need attention all stuff that I "volunteer" for.

In a way I'd like to get rid of a heap of them so I can just spend a bit of time without any pressures or things to distract me. I can spend hours sitting at my desk and no exercising or going out and I'd rather be considering my health and exercising.

Had a bit of a shock today as they want to push on with my contract and I'm a bit reticent - I'd rather stay on a contract basis than go permanent. If this other thing I am working on breaks then there will be a few problems anyway and I'd rather have a breakable contract than anything else.

Something else that I need to consider then... Perhaps part time - I just haven't thought about that either!!!

Oh well a day off then out in the evening and then changing desks at work on Thursday morning. That should be fun - I have no idea if it will work as I'm a bit lively and will be moving next to some other sparky characters too. Oh well we shall have to wait and see.

By now I am shattered

The previous blog forgot to say that I am out every Monday from late September to late May and don't get back until after 11 normally (unless I was having treatments) and so Monday nights can be very bad for me but - at least - I don't tend to have any insomnia on a Monday! Some upside :-)

I was reading some interesting notes today about cancer that it is included as part of the Disability Discrimination Act!! Whoa - that needs more investigation. Not for where I am as they are so keen to get me into being a permanent employee it is untrue but more over the legal aspects which interest me in terms of cancer being labelled as a disability and it appears that the side effects and long term recovery is also viewed that way too. I imagine that there is the ability to pay disability allowance to some people and I wonder how many realise that is the case. Whether or not it is applicable to me, it does show that there is something being done about it and something is in place to cover it.

Start of the week

It always seems to be the same that the start of the week I get tired as I am coming home and gradually each day I get tired earlier on in the day progressively. It does appear to be better and in terms of the utter fatigue I was getting some months ago this is far more manageable.

In terms of work - well that is also now manageable too. I just get on and do my work and crash my way through it. I need to have some time off this week as there are lots of silly little things I need to do and if I don't work my way through them - I will probably forget.

I could really do with losing a load of these things I have been doing for years. I am tiring of running them and someone else can probably run them better than I can and can take some care and attention of them too.

Other than that - Monday isn't so bad I suppose - at least work was OK and the journey was OK both ways so I can't complain.

Fatigue ongoing

I've been tired all day today and slept in and have dropped off a couple of times this afternoon. I make a conscious decision not to sit at my computer on a Sunday but today sat downstairs with my laptop.

I think that I need a few days off this week to get myself organised. Loads of things to do and I just need to sit down and do them. Not least of which are my accounts and also to sort out my diary as I am out non stop now and need to sort that out too.

This tiredness builds up day on day and luckily I do have the weekends to catch up at weekends.

A Personal Journey

Experiencing cancer must of necessity be a personal experience and it is governed by your circumstance in life, your family, your geography and you own make-up, personality etc.

Even amongst Hospitals in the same county here in the UK the regime for dealing with BC is different. The postcode lottery (zip code) can also affect you treatment.

Your attitude, your outlook, your ability to take treatments and your fitness, your age and sex will all determine your own experience.

Some things are constants - TURBTs, BCGs and so on but the thing I am driving at is that things happen to you and you deal with them in your own particular way. My experience of being somewhat nonplussed by the results isn't exactly typical for example.

The thing I never expected was to have so many changes to my personality and to me generally caused, I am almost certain, through the journey so far.

I've noticed that I am really "lively" these days, I kept my table amused with loads of jokes last night and for an introvert you'd have been surprised I think. My wit is sharper than it ever was but my ability to chose certain words that I want to use lets me down all the time. Added to that not being able to remember a speech that I have done a number of times and it brought it home to me that there have been significant changes in terms of my memory and also how I see the world. It no longer matters what happens - nothing trivial can ever be serious again. That is the more amazing part of the journey, you get to see your eventual destiny and get taken right towards that place. You hang there for a while and then ever so gradually you withdraw from it.

That insight helps you to reconsider and reevaluate your world. As someone who has always been in the business of "control" the whole thing has been more traumatic as you have no control over things. What I do like is the ability to look at things in terms that make me compare things against "whether anyone will die". Is it that important, is it life threatening, is it really that important. Most of the answers are no and so what is great is that ability to rationalise things and boil them down to the basics.

I miss having a good memory but I enjoy the fast wit and lighter me. Gradually it is dawning on me that things are getting better. I'm not looking forward to having more tests etc but they are needed and I feel that taking away the immunotherapy treatments have lightened that disappointment.

A great day out

But I completely lost my memory. I've been working for weeks to get this speech learnt and delivered and I got to the meting and promplty forgot the whole thing. Luckily, a friend was up to do it and did a great job and it took a load of pressure off of me.

The lesson learnt is that I can't do what I used to do just a few years ago - learn a 5 or 6 page speech and deliver it without reading it - from memory - with only minimal or no prompting.

I now realise how bad my brain is in terms of this and it reinforces what I thought I knew..

Anyway, it was also a lovely day because the Lodge gave some money to L so she can go on her field trip to Argentina and do her voluntary work and trekking etc. This is great news as it takes her over the £4,000 barrier and she now only needs a few hundred pounds to complete her fund-raising. I think, for a 15 year old, she has worked really hard to get the money together. She has raised it all and done all sorts of activities to get the money. She isn't allowed to work officially so she has had to rely on boot sales, bag packing, sponsored events etc. Good for her. She is going to get a lovely surprise in the morning.

She has the most wonderful opportunity of a life-time to go to Argentina and help establish a school there and undertake trekking, exploring, climbing and other activities. They say she will come back a changed girl. I certainly hope she makes the most of it and - I think - having raised almost all the money herself - she will appreciate the whole thing.

I wish that I had those sorts of opportunities in my day.

Strange Feeling

I have been really pleased that friends are cheering me up recently. I'm happy that things are going right but I still have a nagging feeling that the uncertainty caused through the U turn by the Consultant is worrying me.

Not that I am into conspiracy theories - I reckon it was just an honest case of not fully reading the notes when they decided to stick me on Maintenance having already been on maintenance.

Oh well, out again today and I hope that it will be an enjoyable meeting and everyone has a good time. I have a lot to do again and some more words which are giving me trouble. I hope that it goes alright.

Do you know who your friends are?

I think I do and I think that their kind words and, more so their actions, have been instrumental in my fight and recovery from Cancer.

Cheers guys

Coincidence or what?

was waiting to go home after my meeting and turned to see an old friend who was (Play soundtrack to Twilight Zone) texting me at the same time. We decided to go for a beer or three. Not bad as I had been at a business meeting until then. I was about to catch the 19:45 and ended up on the 23: 00

Yes - well = right - what are the chances of that happening?

I am about to retire hurt I think.

Another nice day

I had one of those funny sorts of days. Funny in terms of the momentary lapse of reason I had when I realised that people are still thinking of me as a "Resource" when I am so much more than that. I am finding that one of my problems is that I need challenges, responsibility and recognition and those are lacking at present. Nowt phases me except being taken for granted as some sort of "secretarial" aide.

So on to more enjoyable stuff. A friend received, at the tender age of 92, his 50 years in Masonry Certificate. He is a lovely man and so Flocky Bicep and I went to the meeting. We hadn't been invited to dine and so made our way back here, got changed and went for a Curry. We initially ventured to one I used to go to and lo and behold - it doesn't exist anymore so we came back to the Village and had a nice curry and a good long chat.

Nice - enjoyed that and got a lot off my chest. I tend to thrash out my stuff on the blog as no bugger listens to me anyway! Tonight was slightly different as it was immediately interactive. Thanks Flocky.